Best practice in the transition to adult services for young adults who had childhood cancer

2021 ◽  
Author(s):  
Helen Kerr
Keyword(s):  
Young Adults ◽  
Childhood Cancer ◽  
Best Practice ◽  
Adult Services

scholarly journals A vulnerable age group: the impact of cancer on the psychosocial well-being of young adult childhood cancer survivors

2021 ◽  
Author(s):  
L. M. E. van Erp ◽  
H. Maurice-Stam ◽  
L. C. M. Kremer ◽  
W. J. E. Tissing ◽  
H. J. H. van der Pal ◽  
...  
Keyword(s):  
Young Adults ◽  
Young Adult ◽  
Cancer Survivors ◽  
Childhood Cancer ◽  
Psychosocial Outcomes ◽  
Well Being ◽  
Childhood Cancer Survivors ◽  
Negative Impacts ◽  
Time Since Diagnosis

Abstract Purpose This study aimed to increase our understanding of the psychosocial well-being of young adult childhood cancer survivors (YACCS) as well as the positive and negative impacts of cancer. Methods YACCS (aged 18–30, diagnosed ≤ 18, time since diagnosis ≥ 5 years) cross-sectionally filled out the “Pediatric Quality of Life Inventory Young Adults” (PedsQL-YA), “Hospital Anxiety and Depression Scale” (HADS), and “Checklist Individual Strengths” (CIS-20R) to measure fatigue and survivor-specific “Impact of Cancer - Childhood Survivors” (IOC-CS), which measures the long-term impact of childhood cancer in several domains. Descriptive statistics (IOC-CS), logistic regression (HADS, CIS-20R), and ANOVA (PedsQL-YA, HADS, CIS-20R) were performed. Associations between positive and negative impacts of childhood cancer and psychosocial outcomes were examined with linear regression analyses. Results YACCS (N = 151, 61.6% female, mean age 24.1 ± 3.6, mean time since diagnosis 13.6 ± 3.8) reported lower HRQOL (− .4 ≤ d ≤ − .5, p ≤ .001) and more anxiety (d = .4, p ≤ .001), depression (d = .4, p ≤ .01), and fatigue (.3 ≤ d ≤ .5, p ≤ .001) than young adults from the general Dutch population. They were at an increased risk of experiencing (sub)clinical anxiety (OR = 1.8, p = .017). YACCS reported more impact on scales representing a positive rather than negative impact of CC. Various domains of impact of childhood cancer were related to psychosocial outcomes, especially “Life Challenges” (HRQOL β = − .18, anxiety β = .36, depression β = .29) and “Body & Health” (HRQOL β = .27, anxiety β = − .25, depression β = − .26, fatigue β = − .47). Conclusion YACCS are vulnerable to psychosocial difficulties, but they also experience positive long-term impacts of childhood cancer. Positive and negative impacts of childhood cancer were associated with psychosocial outcomes in YACCS. Screening of psychosocial outcomes and offering targeted interventions are necessary to optimize psychosocial long-term follow-up care for YACCS.

scholarly journals Does the guided online cognitive behavioral therapy for insomnia “i-Sleep youth” improve sleep of adolescents and young adults with insomnia after childhood cancer? (MICADO-study): study protocol of a randomized controlled trial

Trials ◽  
2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Shosha H. M. Peersmann ◽  
Annemieke van Straten ◽  
Gertjan J. L. Kaspers ◽  
Adriana Thano ◽  
Esther van den Bergh ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Young Adults ◽  
Cognitive Behavioral Therapy ◽  
Childhood Cancer ◽  
Pediatric Oncology ◽  
Behavioral Therapy ◽  
Cognitive Behavioral ◽  
Adolescents And Young Adults ◽  
Randomized Controlled

Abstract Background Adolescents and young adults who had childhood cancer are at increased risk for insomnia, due to being critically ill during an important phase of their life for the development of good sleep habits. Insomnia is disabling and prevalent after childhood cancer (26–29%) and negatively impacts quality of life, fatigue, pain, and general functioning and is often associated with other (mental) health problems. Insomnia and a history of childhood cancer both increase the risk of adverse health outcomes, posing a double burden for adolescents who had childhood cancer. The first-line treatment for insomnia is cognitive behavioral therapy for insomnia (CBT-I). However, access to this type of care is often limited. The guided online CBT-I treatment “i-Sleep” has been developed to facilitate access via online care. i-Sleep is shown effective in adult (breast cancer) patients, but it is unknown if iCBT-I is effective in pediatric oncology. Methods/design We developed a youth version of i-Sleep. Our aim is to evaluate its effectiveness in a national randomized-controlled clinical trial comparing iCBT-I to a waiting-list control condition at 3 and 6 months (n = 70). The intervention group will be also assessed at 12 months to see whether the post-test effects are maintained. Adolescents and young adults aged 12–30 years with insomnia, diagnosed with (childhood) cancer, currently at least 6 months since their last cancer treatment will be eligible. Outcomes include sleep efficiency (actigraphic), insomnia severity (self-report), sleep and circadian activity rhythm parameters, fatigue, health-related quality of life, perceived cognitive functioning, chronic distress, depressive and anxiety symptoms, and intervention acceptability. Discussion Insomnia is prevalent in the pediatric oncology population posing a double health burden for adolescents and young adults who had childhood cancer. If guided iCBT-I is effective, guidelines for insomnia can be installed to treat insomnia and potentially improve quality of life and the health of adolescents and young adults who had childhood cancer. Trial registration NL7220 (NTR7419; Netherlands Trial register). Registered on 2 August 2018

Does the guided online cognitive behavioral therapy for insomnia “i-Sleep youth” improve sleep of adolescents and young adults with insomnia after childhood cancer? (MICADO-study): Study protocol of a randomized-controlled trial

2021 ◽  
Author(s):  
Shosha Peersmann ◽  
Annemieke van Straten ◽  
Gertjan Kaspers ◽  
Adriana Thano ◽  
Esther van den Bergh ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Young Adults ◽  
Cognitive Behavioral Therapy ◽  
Childhood Cancer ◽  
Pediatric Oncology ◽  
Behavioral Therapy ◽  
Cognitive Behavioral ◽  
Adolescents And Young Adults ◽  
Randomized Controlled

Abstract Background: Adolescents and young adults who had childhood cancer are at increased risk for insomnia, due to being critically ill during an important phase of their life for the development of good sleep habits. Insomnia is disabling and prevalent after childhood cancer (26-29%) and negatively impacts quality of life, fatigue, pain and general functioning and is often associated with other (mental) health problems. Insomnia and a history of childhood cancer both increase the risk of adverse health outcomes, posing a double burden for adolescents who had childhood cancer. The first-line treatment for insomnia is cognitive behavioral therapy for insomnia (CBT-I). However, access to this type of care is often limited. The guided online CBT-I treatment “i-Sleep” has been developed to facilitate access via online care. i-Sleep is shown effective in adult (breast cancer) patients, but it is unknown if iCBT-I is effective in pediatric oncology. Methods/design: We developed a youth version of i-Sleep. Our aim is to evaluate its effectiveness in a national randomized-controlled clinical trial comparing iCBT-I to a waiting-list control condition at 3 and 6 months ( n =70). The intervention group will be also assessed at 12 months to see whether the post-test effects are maintained. Adolescents and young adults aged 12-30 years with insomnia, diagnosed with (childhood) cancer, currently at least 6 months since their last cancer treatment will be eligible. Outcomes include sleep efficiency (actigraphic), insomnia severity (self-report), sleep and circadian activity rhythm parameters, fatigue, health-related quality of life, perceived cognitive functioning, chronic distress, depressive- and anxiety symptoms and intervention acceptability. Discussion: Insomnia is prevalent in the pediatric oncology population posing a double health burden for adolescents and young adults who had childhood cancer. If guided iCBT-I is effective, guidelines for insomnia can be installed to treat insomnia and potentially improve quality of life and the health of adolescents and young adults who had childhood cancer. Trial registration: NL7220 (NTR7419; Netherlands Trial register), registered 02-August-2018

Knowledge of Late Effects Risks and Healthcare Responsibility in Adolescents and Young Adults Treated for Childhood Cancer

2019 ◽  
Vol 44 (5) ◽  
pp. 557-566 ◽  
Author(s):  
Jennifer L Lee ◽  
Ana Gutierrez-Colina ◽  
Rebecca Williamson Lewis ◽  
Karen Wasilewski-Masker ◽  
Lillian R Meacham ◽  
...  
Keyword(s):  
Young Adults ◽  
Childhood Cancer ◽  
Late Effects ◽  
Adolescents And Young Adults

scholarly journals The transition of young adults with lifelong urological needs from pediatric to adult services: An international children's continence society position statement

2016 ◽  
Vol 36 (3) ◽  
pp. 811-819 ◽  
Author(s):  
Wendy F. Bower ◽  
Deborah Christie ◽  
Mario DeGennaro ◽  
Pallavi Latthe ◽  
Ann Raes ◽  
...  
Keyword(s):  
Young Adults ◽  
Position Statement ◽  
Adult Services

Young adults with disabilities: Transfer to adult services

1984 ◽  
Vol 7 (1) ◽  
pp. 85
Author(s):  
Michael Hirst ◽  
Sally Baldwin ◽  
Caroline Glendinning ◽  
Gillian Parker
Keyword(s):  
Young Adults ◽  
Adults With Disabilities ◽  
Adult Services

scholarly journals Innovations in Research with Medically Fragile Populations: Using Bulletin Board Focus Groups

2014 ◽  
Author(s):  
Karen Cook ◽  
Susan Jack ◽  
Hal Siden ◽  
Lehana Thabane ◽  
Gina Browne
Keyword(s):  
Young Adults ◽  
Focus Group ◽  
Early Adulthood ◽  
Bulletin Board ◽  
Medically Fragile ◽  
Descriptive Case Study ◽  
Complex Needs ◽  
Adult Services ◽  
Group A

A new group of medically fragile young adults are graduating from pediatric palliative care programs with limited expectations to live beyond early adulthood, and no comparable adult services to support their complex needs. Accessing this population is difficult because of the complexity of their conditions, the extensive personal and equipment supports that limit feasibility for travel, and divergent communication abilities. Therefore, we undertook a descriptive case study using an asynchronous modification of an online focus group, a bulletin board focus group (BBFG). The greatest strengths of the BBFG are the appeal of this methodology for young adults and the multi day focus group becomes both a community and an intervention. An important limitation of this method was participant follow through on discussion threads. This BBFG provided rich and varied types of data, and very positive participant experiences.

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